Had my consult with Defy, looking for opinions and a sympathetic ear (Clomid, ED, Stress)

I had a conversation with Dr Saya yesterday, it went great. It was such a relief to talk to a doctor who know's what he is talking about. I'm in a relatively small city and I've had two doctors tell me they don't know what SHBG does... so you can imagine how nice it was to talk with someone like Dr. Saya.

I've posted before about my history, but here is the short version: I'm am currently in my early 30s, at age 20 I took steroids non-stop for a year, also had some sports injuries (concussions etc). Huge regret, it's something stupid I did when I was young but I cant take it back now. I had symptoms for quite a while but didn't know it was symptoms of low T. In 2011 I finally talked to docs about low libido, poor mood, erection difficulties, etc. I had two total T tests done that year, one was 408 ng/dL and one was 546 ng/dL. I had SHBG and Free T back then too, SHBG was 52 and free T was 8 ng/dL. I don't have the labwork any more but I had a Total T test done in 2006 (2 years after the steroids) and I believe it was about 250 ng/dL. I knew that was low, but I didn't know about the potential for penile damage. The doctor said it was above 200 so I was fine.

The last two years I had my T tested early in the year, it was 805 and 908 ng/dL. Free T was 13 ng/dL and SHBG was 56.5.

I've had a stressful year and my ED became very bad. To make matters worse, I had a rubbery weak erection during sex which caused me to slip out and have an accident. There was no popping, rupturing, bruising or anything else that would suggest a penile fracture. I did have some penis pain and discomfort for weeks. I've had several T tests this year and they have ranged from 500 to 680 with an SHBG at ~60. My free T has generally been in the bottom quartile of the reference ranges. My estradiol is consistently at 27.5 pg/mL but with high SHBG that may actually be too low.

Now, my last test, in November, had my Total T back up to 880 and free T at 15.9 pg/mL (8.7-25.1).

Here's my biggest issue. My ED has been getting much worse, and getting worse fairly quickly. The docs gave me PDE5 inhibitors in July and they worked great. But now they are working less and less (even when I take weeks off to reduce any tolerance). Last night they barely worked at all. I saw Dr. Goldstein in San Diego and he said I have moderate corporal fibrosis. He believes that is causing a venous leak, but he didn't see one on the ultrasound. He thinks the BiMix injection overpowered the venous leak and that's why it didn't show. Goldstein and a local endo believe that my free t is too low due to my high-normal SHBG. Two weeks ago I started 70mg of T-Cyp twice a week. At this point my main concern is preserving (and hopefully curing) my ED. So despite not having talked with Defy, I went ahead and started.

When I spoke to Dr. Saya, he said the TRT protocol is a perfectly valid option for my case. He said he personally would lean, slightly, towards trying clomid to see if my body will stay more consistent at maintaining a higher T level. I decided thats worth trying, but haven't started it yet (this was just yesterday).

After thinking about it over night, I'm scared that while trying the clomid option my T may be low and the fibrosis may get worse. Even if the clomid works there is a chance I need TRT in the near future anyway, especially if my SHBG continues to rise. Being in my 30s my priority is my sexual health. Has anyone had their corporal fibrosis and venous leak cured by fixing their testosterone levels? Talking to my lady friend is fine, but only other men can understand what this is like. I am terrified of losing my sexual future. I'd love to hear from other men who have gone through something similar. Has anyone tried penile shockwave therapy, stem cells, or any of the other experimental ED procedures?

It's so frustrating to have my past doctors not recognize this earlier on. I'm glad I found this community.

Thanks for listening.

I forgot to mention (and forgot to tell Dr. Saya), I pee frequently at night. If I don't stop drinking fluids before 8pm I'll pee 3-4 times a night. I always pee at least once a night. I'm also generally very hot at night. I'm currently about 7% bodyfat (without dieting or trying) and I've always been very lean. I'm wondering if that is indicative of low bio available E2.

Your anxiety is flashing like a neon sign; I'm sorry you have to deal with so much stress. However, consider what you just wrote. You had a "great" session with Dr. Saya, and it was a " relief" to talk to such a top flight doctor. Now, 24 hours later, you're doubting the course the two of you charted.

Dr. Saya told you the TRT protocol you had begun was "perfectly valid;" in other words, you could continue on it, but your age had him leaning toward a Clomid trial. I read this to mean it's your call. Either testosterone or Clomid, are options. You had an opportunity to express your reservations about Clomid and your erectile issues. How did he address them? If the thought of Clomid generates such anxiety, you have a sound alternative - testosterone replacement. We can't make that decision, but whichever you choose, you'll need to give it a good faith effort and see what happens.

Which option is going to bring you greater peace of mind?

There's just way too much that can lead to ED and it really is the last piece in the TRT puzzle, many (most) of us rely on PDE5i's, and that's just fine. People that say TRT fixed their ED are either unicorns or not being completely truthful. Many men find Thyroid issues, Adrenal issues, malabsorption of nutrients thru gut issues, problems with Endothelial fucntion/Nitric Oxide, dietary, obesity...ED is terribly complex. As far as unicorns go, it's rare to see a Clomid success story, at least long term. One thing works for sure...injections...you'll likely end up there anyway if you want to commit to HRT.

Being in your thirties, trying clomid. I believe is the way to go. Most here buy ED meds from India pharmacies, much more affordable. I never heard someone could build a tolerance to ED meds. You're in good hands with Defy. Sorry to hear about all the struggles your going through.